Accept and Believe in Your Child

Mother and daughter having fun in park in autumn
This post was originally published on Parenting ADHD & Autism on July 5th, 2016. 

It’s critical to not be critical.

I’ve been listening to the podcast Invisibilia, and this week’s episode is on The Problem With the Solution. It’s about a woman’s search for effective supports for those with mental illness. She finds herself in the town of Geel, Belgium where families agree to host people who have significant mental health challenges. The families are not told what their boarders’ diagnoses are, and they act as hosts for an average of 28.5 years. The host families in Geel do not feel a need to know the diagnosis, because they prefer to understand their new tenants as individuals, without preconceived notions.

Later in the show, Lulu Miller interviews Jill Hooley, a researcher in the psychology department at Harvard University, who studies the factors that lead to psychiatric relapse in patients with conditions like schizophrenia and depression. Dr. Hooley described the work of a British sociologist, George Brown, who found that patients who were suffering from chronic schizophrenia did a lot better when they didn’t return to live with their families after being released from the hospital. Furthermore, Dr. Brown discovered that if the patient did return to live with his family, the more critical, hostile, and emotionally over-involved the family members were, the more likely the patient was to relapse.

We all know what critical looks and sounds like.

  • “How come you never pick up after yourself?”
  • “Stop picking!”
  • “You need to work on having more friends.”

Hostility is defined as a state of ill will and bad feeling and family members are probably also familiar with how that sounds.

  • “You clearly don’t care about the rest of us.”
  • “I hate you when you do that.”
  • “You have ruined my life.”

We intuitively know that statements like these hurt.

Be cautious of your message.

But it turns out that emotional over-involvement can be just as damaging. Emotional over-involvement is when family members treat their children as if they will not be able to live a productive and constructive life unless they change. There’s a constant push to “make it better”. Sometimes parents will blame themselves for their child’s disability and openly pity the child.

  • “It breaks my heart to see him suffering.”
  • “I’d do anything for her if it would help.”
  • “There’s nothing I wouldn’t do for my child.”
  • “I know he hates going to therapy, but I want him to have the skills he needs.”

Why is this harmful? Our children hear the message that they are not good enough, that we would love them better if they were different from who they really are. That really hurts.

The Invisibilia episode ends with Lulu Miller talking to her own family about her sister’s trichotillomania (compulsive hair pulling). A particularly poignant moment comes when Lulu tells her parents that her sister had to leave home because she felt that her family wanted her to be someone that she was not. Her father recounts a scene when Lulu’s sister was 2 or 3. She was having a major meltdown at three o’clock in the morning, “just screaming and yelling in her bed. And I went in there, and I got angry at her…. I said stop it, stop it. And I remember in her tears, as I was getting angrier… she kept saying, ‘I can’t help it. I can’t help it.’ And I didn’t hear that. It’s something I will always regret — my feeling anger instead of empathy.”

Let your child’s truth be your guide.

In her book, The Insider’s Guide to ADHD, Penny outlines 12 ADHD Truths for effective parenting of kids with ADHD that she learned from surveying and interviewing 95 adults with ADHD. One of those strategies is “Discover, listen to, and accept your child’s unique truth.”

So, how do you do this? There are four strategies that can make a big difference.

  1. Time-In (sometimes called Special Time).
    • Time In is a specific time during each day when your child gets a chance to feel appreciated and understood for who they are. It gives children one-on-one positive attention on a daily basis just for being themselves. It’s one of the most powerful techniques I know for restoring the guiding relationship.
    • Learn how to do it by reading this article I wrote for the site ExpertBeacon.
  2. Use more declarative language (fewer questions, fewer commands).
    • Declarative language is when you state out loud what you are thinking in the form of a comment. Examples include sharing an opinion (I love spaghetti!); making a prediction (I think we are going to the movies tomorrow.); announcing or celebrating (We had a great time today!); observing (I notice that your friend wants a turn.); reflecting on past experience (Last time this stopped working we checked the batteries.); or problem solving (We need tape to fix it.). It does not require a response. Rather, it invites experience-sharing, and provides an ideal social framework for later conversational interactions. I aim for four declarative statements for every question or command that I give to my kids. And I force myself to make four positive declarative statements before I’m allowed to issue the question or command. This sounds simple, but it is incredibly difficult. It also makes a big difference!
    • Learn more about declarative language by reading this article by Linda Murphy posted on the Relationship Development Intervention website. (It’s where I got the examples listed above!)
  3. Monitor and control your body language.
    • Kids with ADHD and autism are keenly sensitive to your body language, so you really need to watch it. Use body language that is open, friendly, and respectful of your child. An open and welcoming posture, friendly (not forced) facial gazing, giving your full attention, with a calm and pleasant expression on your face. No rolling your eyes, looking away, refusing to shift your focus to your child, exaggerated sighing, or scowling. You want your child to get the strong message that you want nothing more than to be with them.
    • Read this article by Julie-Ann Amos on the Body Language Expert site to understand why this is so important.
  4. Presume competence, but provide appropriate support.
    • Kathie Snow says in her article Presume Competence, “Low expectations are the norm [for people with disabilities]. Hopes and dreams are stripped away by physicians, educators, services providers, and even parents…. If a person isn’t considered ready for [fill-in-the-blank], it’s thought he could be harmed. But think back to when you left your family’s home: were you ready? Were you competent to go out on your own? You most likely believed you were, but what about your parents? …[You] learned from your mistakes, found the help you needed from others, picked yourself up, and made it – one way or another! ….Why can’t people with disabilities have those same opportunities?”
    • Sometimes we ask more of our kids than they can handle. That’s okay – be sensitive to when that is happening, and push your kids a bit, but not so much that they are overwhelmed. The goal is to believe that they can do it, and to keep pushing them to be the best version of themselves that they can be.

Sometimes when I tell parents to “get off the negative and focus on the positive,” they ask how their child will learn to function effectively in society. The answer is that kids do well when they can. Give them the tools. And keep in mind that the most powerful motivator in the world is a caregiver’s unconditional love.

The language we use with our children has a tremendous impact, whether it's emotionally charged, commanding, or body language. Let your child's truth be your guide!

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Frames of Reference in Autism

Recently I’ve been listening to Invisibilia, a podcast “about about the unseen forces that control human behavior – our ideas, beliefs, assumptions, and thoughts.” This week’s episode is on Frames of Reference. The first segment is about Kim, a doctor with Asperger’s Syndrome (or “high-functioning” autism). Kim participated in a study designed to determine whether stimulating specific regions of her brain with strong magnetic impulses (transcranial magnetic stimulation or TMS) would change her ability to understand some of the subtleties of language – sarcasm and emotional content, in particular.

TMS did change her abilities, but only for an hour or so. And in that hour, Kim was given a window into an entire world that she had known nothing about prior to participating in the study. In one part of the story, Kim described an experiment in which she watched a video clip before they administered the TMS, and again after the TMS. She describes the video from her perspective each time – first as a person with autism hearing the words and being confused, and then immediately after the TMS when she could understand that the intention of the speaker directly contradicted her words. “And now I saw it: the body expression, the facial expression, and the tone of voice in that interaction. [I] completely missed the meaning of the whole interaction until after the TMS. And then I saw the whole thing clearly.”

I think that this may be the first time I have truly (TRULY) understood how difficult it is for people with autism to understand the social-emotional world. And how utterly effortless it is for others.

ReneeMagritteHumanCondition

René Magritte – The Human Condition – 1933

At the end of the segment, the hosts (Alix Spiegel and Hanna Rosin) discuss whether they would want to get the treatment if they had Asperger’s. Hanna answers, “If it were me, I think I would make the same choice Kim made. But if it was someone I loved, a child of mine, my first instinct would be to protect them from it… Because another thing we value is self-acceptance. You don’t want someone spending their whole life grasping for an ideal version of themselves, and not the person who they are.” Alix then says, “I think that for Kim, seeing this other world, getting this other frame of reference… gave her self-awareness, and the grace of self-awareness. She was suddenly able to see clearly what she was, and what she wasn’t.”

I was listening to this episode with my oldest son, who shares Kim’s diagnosis. After the segment finished, I paused the podcast and asked him what he thought. He answered that he didn’t think he would want to get the treatment. I asked him why not. He said that he was okay with the way he processes the social world.

I then asked him about the video clips and what he would have heard. He said that while he would have noticed the nuances of the interaction (the body language, the facial expressions, the tone), he would have focused on her words and been confused.

But then he said two things that I found incredibly interesting. The first was about how he thought understanding people was like programming computers. He said that Kim’s experience of the video conversation was like when he wrote a program and thought it would work perfectly, and then when he tried to compile the code or run the program, it worked differently than he’d thought it would. This led him to look at the code carefully, and try again. And, inevitably, it would fail again, but in a different way. So he would try another fix, and another, and another, until he was able to get it right. He does the same thing when talking to others. Communication by successive approximation!

The second was about a book he read, Moral Politics – How Liberals and Conservatives Think, by George Lakoff. The most important lesson my son took from that book was that you can understand people if you can understand their frame of reference. When he first read the book, his frame of reference was that of a liberal. When viewing our political system through that framework, he was unable to understand why conservatives felt as they did about certain issues. After reading Lakoff’s book, he understood that conservatives have a different frame of reference, and it is not a bad frame, just a different frame. Prior to reading Moral Politics, he had no idea that he was biased in his perceptions. That’s true of everyone, he said. We all have our own unique frame of reference, shaped by our highly individual neurology and our experiences. As he spoke, I began to more clearly appreciate the fact that none of us can ever truly understand each other, just as we cannot truly understand ourselves.

We can just make successive approximations until we understand each other well enough.

Kayaking Through Life: Supporting kids with challenges

Kayaking Through Life: Supporting kids with challengesIn a previous post, I talked about the importance of providing just the right amount of challenge. I made it sound so easy. It’s not. Kids respond in different ways to being challenged, and the ways they respond can drive a parent’s response. Below is a story that is a metaphor for raising kids who have very different responses to being challenged.

Last week, we were on vacation and went kayaking. My husband was at a conference, so I took my boys by myself. We have been kayaking as a family a number of times before, but always with two of us in each kayak – one adult and one child.

My oldest was worried about kayaking on his own, but there was no one else on our tour who was able to partner with him, so he had to figure out how to do it by himself (with help from the tour guide). He did a fantastic job; he kept up with the guide, controlled his kayak, and did well. At the end he felt good about the trip and his abilities.

That was not the case for my youngest, who was in a two-person kayak with me. Kayaking on the ocean, against the wind and tide which were pulling us strongly back to the shore, was a lot of work. My youngest has increasingly been unable to push himself to do things that are hard, and kayaking that day was hard work! So he would dip his paddle in, first on one side, then on the other. But he never actually pulled the paddles through the water so as to propel the kayak forward.

Mind you he is a teenager and now over 5 feet tall. When he was smaller and weighed less, it was easy enough to control the kayak with him in it. But I am no longer strong enough to maneuver and compensate for him. I was paddling as hard as I could to keep us from going backwards to the shore, and away from the group. I just couldn’t do it. About halfway into the tour, I realized that if we were going to have any hope of keeping up with the rest of the group, I had to move to the center of the kayak, and tell my son to quit paddling so my paddles wouldn’t hit his. This was the only way I could keep control of the kayak.

I was so grateful when the guide took pity on us and strapped a lead to our kayak to help us stay on track. With that assistance, and my more effective positioning, we were able to stay more or less with the group, even though my son was getting a free ride, doing no work at all.

Kayaking in Assateague

Kayaking in Assateague

It was a lot less frustrating, but I was exhausted, and worse, my son didn’t learn anything.

In the end, I regretted taking the trip, even though it was a wonderful tour. My youngest and I would have been much better off renting kayaks and dabbling around on our own in the marshes and along the shore, or working on paddle skills without the pressure of having to keep up with the rest of the group.

Later I realized that this was a good metaphor for what happens as we try to parent different kinds of kids. The kids who feel competent (even if they are scared) respond well to being challenged.

But there are other kids who are afraid of taking on challenges due to repeated failure, fear of failing, perfectionism, or some other challenge that has taught them that they will not succeed even when they try really hard. These kids can respond by becoming passive and increasingly hard to teach.

Our society demands that kids keep up, staying on a developmental track that allows them to function independently by the age of 18. If you have a child for whom that goal isn’t realistic, you may find yourself kayaking against the wind and tide, pulled farther and farther from the group.

When “No!” Means “I’m Scared or Overwhelmed!”

When "No!" Means "I'm Scared or Overwhelmed!"In The Many Meanings of “No”, you learned that “No!” doesn’t always mean No. Sometimes “No!” means I’m scared or overwhelmed! How can you help a child who is so emotionally overloaded that he or she is unable to do as you requested?

“I’m overwhelmed, and can’t do anything right now.”

Have you ever gotten bad news just before someone asked you to do something? When you are processing something that evokes strong emotions, your limbic system (where you process those emotions) kicks into overdrive, blocking communication between different areas of the brain, especially those used in remembering and doing. When you are feeling strong emotions, it’s very difficult to do anything other than get through the most intense moments.

Trying to get your child to do anything when she is upset is useless; you must wait until she calms down before expecting any action. There are many strategies you can use to help your child feel understood, and to help her calm down; I list a few of them below.

  • Use empathy. Let your child know that you understand what he is going through. Instead of repeating, “It’s time to get out of the bathtub now!”, say something like, “I can understand why you don’t want to get out of your bath — we are having so much fun playing together!”
  • Give him something to look forward to. “If you get out now we can have a snack and read a story before going to bed.”
  • Communicate nonverbally. Some kids have more trouble processing words when they are overwhelmed. For these kids, show them that you love them and will help them through this. Communicating with actions (a sympathetic gaze or a gentle squeeze of the hand) or just by calmly sitting nearby can help a child who is feeling out of control to calm down.
  • Remove all demands. Some kids get so overwhelmed that they just need to be alone until they have control over themselves again. For these kids, you can gently say something like, “I see you are really struggling. I’m going to go into the other room until you feel calmer.”

“I’m scared!”

I remember once being stuck on the side of a mountain while hiking. I was not wearing the appropriate shoes, and I thought that if I moved, I’d go tumbling down the side of the mountain. It took me 45 minutes to figure out how to safely get off the rock face and back on the dirt path that led me the rest of the way up the mountain. If I had been forced to move faster, I might well have lost my footing and fallen down the cliff. Making me go faster would not have had a happy ending.

Sometimes when a child refuses to do something, it is because they are terrified.

Here are some strategies that can work for a child who is scared:

  • Use empathy. Sometimes just knowing that someone else knows you are struggling, and is rooting for your success is all a child needs to muster up the courage to forge ahead. In our Raising Your Challenging Child class, Dr. Shapiro and I devote one of our sessions entirely to empathy because it’s such a powerful technique.
  • Help your child know what to expect. Some kids get anxious because they don’t know what to expect. I had a friend who put it really well – she said, about her parents’ divorce, “It was just one of the many things adults do that made no sense to me as a child.” Think about it from your kid’s point of view – they are expected to just do as we say, without understanding why, and without having any control over their own world. I’m a big fan of visual schedules (pdf) for kids like this. For situations where kids may need explicit instruction in what is expected, Carol Gray’s Social Stories are terrific, as are her comic-book conversations.
  • Anticipate the unexpected. Thinking through how to handle more than one outcome can be empowering. Two strategies that can help your child learn to do this are SOCCSS and Goal-Plan-Do-Check.
  • Meditation. Just this week, my son came downstairs the day of his science fair and told me he was panicking. I asked him if he would do a meditation on anxiety with me, and he said he would give it a try. We use the app Stop, Breathe, Think, and had purchased the “anxiety pack” for $1.99. After a 6 minute meditation, my son said he felt calm, and his teachers reported that he did an amazing job, and didn’t seem at all anxious. Wow!
  • Identify thinking errors. Sometimes kids get anxious because they think things like, “This will take forever!”, or “I can’t do ___”, even though there is no evidence that this is true. Learning about common thinking errors, and thinking of more realistic replacement thoughts (“This will take 15 minutes,” or “I need more information before I can do ____”) can help your child feel less anxious.
  • Help your kid label emotions; brainstorm coping strategies. Some kids are completely unaware that they are starting to get dysregulated until they completely lose it. Kari Dunn Buron’s Incredible 5-Point Scale provides a method for helping kids to identify their emotions before they reach the critical point.

Anxious and overwhelmed kids can’t do anything until they calm down. Helping them anticipate what will happen, and teaching them coping strategies will help them take on new challenges, even when you have asked them to do something hard. Teaching them to self-advocate and to consider other ways to accomplish their goals will serve them well when they hit barriers in less forgiving environments. 

Is That the Therapy I Want to Do?

Is this the therapy I want to do for my child?In talking to other parents,  you may learn about an intervention that has helped someone else with a profile similar your child’s. These therapies are sometimes quite expensive, and many are not covered by insurance.  How do you decide what to do?

The following questions can help.

What is the research evidence? 

Some interventions have a long list of peer-reviewed research documenting their effectiveness. For example, studies validating the approach used in Cognitive Behavior Therapy as a treatment for anxiety disorders date to the 1950s. Other interventions are relatively recent, and may not have as many studies documenting a positive impact.  Working memory training is an example of a recent intervention that has some evidence validating the approach, but there are still questions about whether it generalizes beyond the tasks it trains.

It is important to note that all interventions have to start somewhere, and just because there isn’t strong research support doesn’t mean the approach doesn’t work. But it does mean that it is more of a gamble than a therapy that has a long history of research documenting its efficacy.

What is the financial cost?

  • How much does it cost?
    • Does the provider take your insurance? Or are they out-of-network?
    • How much will your insurance reimburse?
    • What will your final out-of-pocket expense be?
  • How many sessions will it take?

All these factors will help you calculate the actual cost of the therapy. Think through this ahead of time. Can your family afford it?

What is the emotional cost?

Therapy is hard work. Your child will be asked to do things that are quite hard. Does your child have the emotional reserves to do the work necessary to make progress?

There is also a cost to you. If your child is resistant, do you have the emotional reserves to deal with fighting with your child about doing the therapy?

How much time will it take?

Do you have the time and flexibility to work this therapy into your schedule?

  • How long will it take to get there?
  • How long is the appointment? What is the recommended frequency?
  • Are you expected to do work between sessions? How long will that take? What is involved?

Could it harm my child?

The Hippocratic Oath is “Do no harm.” Unfortunately, some interventions have the potential to be harmful. Make sure you are aware of the side effects and potential disadvantages for a child with your profile before you expose your child to the therapy.

What exactly does the therapy do? 

It sounds obvious, but make sure you understand  exactly what issues the intervention will target. Make sure the issues you are targeting are high-priority so your child doesn’t burn out. (See “What is the emotional cost?”, above.)

Measure your baseline at the beginning of the therapy and again on a regular basis during the therapy. This will help you determine whether the therapy is having a positive impact. Ask the provider how long it will take for you to see changes. If you don’t notice a positive change, terminate the therapy.

Conclusion

I have a mantra: “You can’t boil the ocean”. It’s easy to think that if we enroll our children in as many therapies as possible, we can “fix” them. It’s better to pick one problem that is your highest priority and focus on that. Answering these questions will help you to strategically select interventions that have the potential to effectively address high-priority problems.

(Image source)